Raising a Child with Hearing Loss

The Call

When I was 10 weeks pregnant, I received the call from our OB. I remember I was sitting in my windowless office. There were a dozen red roses on my desk, which had arrived earlier that week from my husband for Valentines Day. He had never sent me flowers at work before – but I suspected he wanted to do something special for me this year.

“Melissa, I am calling to discuss the genetic results from your Counsyl test,” she said. Her tone was alarmingly to the point. “It appears that both you and your husband are carriers of a non-syndromic hearing loss gene called DJB2. This means there is a one-in-four chance that your baby will have hearing loss.”

While Sonya was special from the moment I knew of her existence. I certainly wasn’t expecting her. My husband and I were so happy and in love — having a baby wasn’t the most important thing to us. But, I was eager to finally rid my body of the pill. If a baby came or didn’t come, it was meant to be, I decided.

A month later, my body felt different. My breasts were tender and my stomach churned at the smell of garlic or coffee. I bought a pregnancy test at the pharmacy around the corner and was shocked to see two blue plus signs. I called my mom. I couldn’t believe that my life was going to change so drastically. I was scared at what would happen to my body. I was scared about what would happen to my relationship with my husband. I cried. But beneath the tears my heart beat with excitement and my soul felt light. I was frightened but so very happy at the same time.

The OB said that I had an option of an amnio, though she didn’t recommend it. Such a procedure was risky – and why risk an otherwise perfectly healthy pregnancy? The level of hearing loss was also unknown. The baby could have minor hearing loss that would be fixed by a hearing aid. There was also a chance that the baby would be profoundly deaf (and while this testing was new, most babies with similar genetic mutations had profound deafness). She told me to speak with a genetic counselor and to think about it. I felt an overwhelming and consuming darkness from within. I hung up the phone and went to the bathroom. A sob from deep within my chest seemed to erupt as soon as I closed the stall door.

A week later, my husband and I met with the first of many genetic counselors, who unfortunately had little knowledge of the GJB2 gene mutation we both carried as this mutation was only recently added to the panel test. My husband – being the rational and logical problem solver that he is – spoke to numerous other geneticists, professors and doctors over the next several months. I tried to join him in the research, but the thought of deafness was so painful to me that I ultimately decided to do what I felt was best for me and for Sonya – and that meant to be in denial. After all, there was still a 75 percent chance that Sonya would either be a carrier of the recessive gene (and therefore it would not be expressed) or that she wouldn’t have it at all. These weren’t terrible odds.

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Welcome! Hearing Sonya Rose is a weekly blog that focuses on raising a child with hearing loss. Our daughter Sonya was born deaf and now wears bilateral cochlear implants. Our goal is to offer advice and seek connections with other parents in our shoes. Thank you for reading!